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Difficulty Explaining Symptoms

Posted Dec 11 2008 9:07pm

I had medical appointment on late Wednesday afternoon. I felt sick, but amazingly I felt I had more energy than usual. So I made two trips to Supermarket; one before the appointment, and the other after the appointment. My energy estimate was wrong, and the second trip to the Supermarket was a mistake. After the second shopping, I was little struggling at my car. A kind man was looking at me from the nearby Tavern, and came all the way to give me help to put the wheelchair back in the car boot.

Just for the record, the strange man I was feeling very uncomfortable wasn’t there for my relief.

I had been feeling something was going on in my body. But I could not pin point what it is as usual.

It feels like I got some GI virus and some other virus, or my immune system is just over reacting. I feel my body is struggling digesting food. I get slight nauseous, but not even slight enough to mention. I’m probably more diarrhea-ish, but I cannot tell exactly because part of it is coming from constipation medicine. Pains are coming back, but not too bad. Temperature is higher, but not too much. My muscles are very tired and I notice the fatigue when I pick up Basil or mixing rice and vegetable in a bowl. I get worse pain in left inner ear. I get sore throat. I cough sometimes. I have tension pains in neck, shoulder and upper back. I’m getting pains all over my body, including shooting pains coming from internal towards my back and from back spine. I notice tachycardia with strong chest palpitation while I’m standing up. Nystagmus is so bad that not only I feel it but also affects vision when I try to read a book. Letters a swinging rapidly and I just cannot focus on them. I lost appetite, so I’m eating less. I feel I have more energy, but in reality there is no difference. And ironically, I actually get exhausted quicker.

But nothing is really significant. All I can say is that something is different and something is not right. But considering my experience with ME/CFS symptoms, they usually go away and would not come back for a while. From my experience, nothing really is serious enough for attention or treatment. They are just inconvenience. And I’m not engaged in any productive activity, it is silly to complain. Since I tend not to pay attention to my symptoms, I usually forget about them when I’m in doctor’s office.

When it comes to pain, it is no different explaining general condition. I cannot tell what kind of pain I have. There are different types of pain. Some I can identify as stabbing pain, tension pain, or pins and needles. But there is more variety of pains. There are also sensations that haven’t developed to pain yet, but it is clearly there. I don’t know which pain can be explained as burning pain. At the moment, my whole left leg has pain. There are joint pains that come and go in hip, knee and some toes. There are sensations. And there is pain I don’t know what to call. It is something like the pain you would feel if you stretch your muscles more than its capacity but not yet toned apart. This pain is shifting between another pains that you would get after sports training and the pre-pain sensation.

Now I’m wondering which symptoms and what degree of symptoms are important enough to mention. I don’t have skill & knowledge to select the symptoms that should be mentioned. Usually, I tell Dr TL some symptoms to give him some idea how I’m doing, not to seek treatment. Sometimes I feel they are just too many and less significant to mention.

I’m aware that I’m a difficult patient. Dr TL is very patient with me. And he has a talent to see what is the problem from my extremely vague explanation. When I’m not sure what to tell, he changes his question to more specific one, such as how is my pain going.

Then, I remember the shooting pains in lower back, and pains that are increasing but haven’t reached to the point I raise alarm. (I try to measure pains in scale of 10. And I don’t pay attention when they are under 5 out of 10.) He asks when was the last pain I had. Then, I can remember that it was just about 30 minutes ago.

He physically examined my abdomen and side back area to make sure there was nothing serious going on.

My medical knowledge and common sense are very poor. I only learn about conditions and illnesses when I’m suggested the condition or diagnosed with it. And I’m slowly picking up knowledge and common sense from Dr TL. I see human body anatomy charts, but I cannot really tell where exactly my organs are because my body is not transparent like the chart. Then I get confused how anatomy chart and bone chart connect to each other… Dr TL pointed me where kidneys are; they are at the back, just under the ribs. Then, I could tell that’s where my shooting pains are coming from.

He decided to check urine sample. I first thought I was going to visit a pathologist another day and give the sample. But he gave me the cup, and told me that he was waiting for me. I felt it was embarrassing. I never gave the sample to the doctor. He told me that he does this everyday to make me feel better.

He told me that there were ketone and blood in it. To investigate, he ordered blood test. This time, he told me to have it in the following morning, and phone in the afternoon to find out the result. I usually take my time and have it done to have the result ready for the next appointment. So, this instruction made me alarmed a little.

I only knew about ketone has something to do with diabetes. And I had a kind MEite explained to me that many MEites get secondary diabetes. But it is really depends on each individual so there is no need to panic. I googled ketone and found out that it can be in the urine when a person is starving. I’m not starving, but I’m not eating properly. So it could be the reason. And some virus infections I’m feeling could be the reason for the blood.

I managed to get the blood test in the morning. I woke up around 12:30 am because it is my sleep pattern at the moment, so there was plenty of time for me to start up and warm up my engine for the outing. But my body was little shaky in the morning; it was kind of tremor and when I tried to move limbs, they jerk a little. Maybe it is just the time of the year.

I asked the pathologist when the result would be ready. She told me the next day. I explained that I was told by GP to phone in to find out the result in the afternoon. She stared at my face for a couple of seconds. Then she made a thinking face. Then, with little hesitation, she told me to try 5 pm.

While I was resting at home, I became too unwell to make phone call. So, I have to wait until Saturday appointment to find out the result. The way I am, I will be resting in the bed all the way till the time to get ready for the appointment.

Posted in Doctors, ME/CFS      
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